Recent content by Janae Warren

Sounds like our girls are going thru the same thing. The acapella device has helped a lot! Along with salt water nebulizer treatments twice daily. I told the dr that these things are helping. The diagnosis is still up in the air. Just finished the bronchoscopy a few days ago. Haven't got...

Wow! I'm so happy you got diagnosed- Somehow having a name to call it feels liberating. Our daughter will be genetically tested next month. I'm really looking forward to hopefully knowing for sure what this is. They did the nasal cilia test and bronchoscopy a few days ago. They're going...

I recently posted a thread about my 7 year old daughter. She has symptoms of CF but very low sweat test results. One of you nice people posted about PCD- and that is exactly what the Pulmo Dr thinks she has. Everything that is written about PCD relates it to CF and says the treatment is...

Are your tests borderline? My daughter's test was around 10 on each arm,which of course is very low. The pulmonologist made me feel like I was obsessive mom last week. "When you hear hooves, Don't go looking for zebras." he said. Really upset me and made me start questioning myself. But my...

I'd never even heard of PCD till you asked. I've been researching it. They are sending her to a pulmonologist soon. I'm so nervous about going but really hope we find some answers soon.

We just got back from Dr this week and she wants to push for further testing too. The reflux medicine seems to be helping. We'll see...

Thatk you so much for your helpful response. We have follow-up with the dr on Wednesday. My husband and I are in a quandry of how hard to push. I keep thinking "maybe this is just how our daughter is going to be- wet cough and mucus spitting all day!". I even hear some online who are just...

Thank you for your confirmation of my gut feeling. I know something is "off" but with the negative sweat test and good peak flow numbers I wonder how hard to push. We have a follow-up appointment with the nurse practioner on Wednesday. The last MD dr to see her was going to refer her to...

a Thank you so much! It's funny that you mention this because at my daughter's last appointment I mentioned her acid reflux to the Dr. She tells me that she has wet burps etc. So I wondered if that is contributing to her lung disfunction also. I hope that we start seeing some results from...

It was an accredited location. And both arms were about 10ml. So that's pretty low. Never heard of CPT before. Need to look it up.

Well our 7 year old daughter came back negative on sweat test. Which is a relief but leaves me puzzled. My neice is a carrier. We just found that out. My daughter has to "heeeave" throughout the day, every day, to work up the mucus and spit it out. It is just part of our daily life. I...

My first touch with CF was thru a friend. When I met her she told me her son was sick. He was 27. He had CF. He died shortly after. When we became close friends she told me of the other children she lost. One was an infant boy who died soon after birth. Another son died when he was...

What a sweet intro you posted! Best wishes to you!

Hi littledebbie My name is Janae. I'm a mother of two awesome children- Our son is 14 and always been healthy, our daughter is 7 and has always been "the sick child". I have been reading on this forum for 3 months now. Tomorrow our little girl is getting the sweat test done. I don't want...